October 2011 Rads

Robyn6463

5kidsMom - Really, the social worker showed up NOW????? Where's she been? I had a mini-meltdown on the phone with my ins. co. last week over some unpaid claims, and they referred me to a Nurse and to a Case Manager to help me with my claims. They said I should have been enrolled in both programs back in June when I was diagnosed. Well, I've made it through surgery and chemo without them...I guess I can still use their help, but it would have been even MORE helpful 4 months ago! Really! Last chemo tomorrow. Genetic counselor and simulation next week. Here we go!

Kay_G

Robyn6463, another thing we have in common!  I have had insurance issues too!  And I also had a social worker talk with me during the first rad treatment.  And guess what to add insult to injury, she was an intern and still a student.  For some reason that made me mad.  Someone from the BS office who was basically functioning as a social worker (although she was a nutritionist) did talk to me right after diagnosis and said to call if there was anything I needed help with.  But radiation has their own social workers separate from the surgery and oncology who share them.  What really got me though is a call yesterday from the hospital about bills.  My DH works for the hospital and our insurance is through them.  She wanted to know if I received their statements and had any question about them.  I told her I just received that morning an EOB from the insurance co. and it showed they finally paid for an MRI in March.  Well the hospital turned that invoice over to a collection agency so the billing dept person that was calling knew nothing about it.  She also said she couldn't answer any questions or do anything with insurance company issues.  So at the end of the conversation, she says thank you and call us if you have any questions on your invoices.  I said why would I call you when all you can tell me is you don't know anything,  I told it was extremely frustrating to deal with them especially since the insurance was through the hospital and they really should be able to do something to help when claims are not processed correctly.  I said it must either be an issue with how you're billing the ins. co. or an issue with the insurance co. both of which you should have responsibility for.  She said sorry she understands my frustration and again she said if you have any questions on your invoice, please call.  I guess they're trained VERY DILIGENTLY to say that because it went on two more times with me telling her again why would I call them when all they tell me is they can't answer any thing.  So frustrating!  The hospital does such a good job in every other way of taking care of patients except with their billing.  I will have to see about a case manager helping.  I did have one, but she hasn't called me in a long time.

Robyn6463

Kay - Wow, I understand the frustration with the insurance! I've had to call about every single radiology bill, mammos, CT scans, MRIs, etc., because the radiology company at my hospital is not a participating provider with my insurance...but because my hospital is, and they're the only game there, the bills are supposed to be upgraded to "in-network" automatically. But they aren't. I've had to call, sometimes 3 times, over each and every bill to get them taken care of. I'd love to give up, but 30% of these bills is a LOT OF MONEY! It's been a nightmare. But now I have a "champion" from the ins company assigned to help with that. We'll see if it works! 

Elizabeth1889

5kidsMom:  I sympathize with your frustration over the social worker.  By the time I got to rads, I was six months into my cancer journey and had already survived surgeries and chemo.  Before my first rads appointment, an American Cancer Society volunteer accosted me and would not leave me alone until I talked to her.  She kept talking to me as though I were brand new to cancer treatment. It was annoying and I ended up being upset before I even met the RO.  To make matters worse, this same ACS volunteer accosted me again a few weeks later when I was in the rads dressing room and started talking to me as though she had never seen me previously.  That time I had to be rude to her to make her go away.

Snoopy73

Hello beautiful ladies! Finished #7 yday, so 23 more to go!! I am scheduled for 30 rads with a 200 boost per rad??! ( thats what my RO told me on tuesday). So far no skin issues, i continue to use Miaderm cream and cornstarch. I started getting the twitches on my affected breast last night.. was told that if they become worse i can take tylenol/ibubrofen. I am still experienceing the musclke aches on my legs, thighs & arms.. met with my MO yday and she said that its from the TAxotere and they will eventually go away... Still getting the hot flashes:-( was told that for me thy are form the Zoladex shot that i get every 4 weeks, they should stop after my last shot which is end of the mth... BUT will probably get them again when i start Tamoxifen!

I have noticed that i get ssooo tired by the end of the day... my crazy hectic schedude does not help!!  working from 8.30 to 3pm rush to catch the train, then drive to the CC for my Rads at 4:30pm then go get the kids then home preparing dinner (DH helps out) then bath time then bedtime.. so by 9pm I am all worn out!!!God help me get through this phase pheewww...

Dexxy - YHeeaahhh its 5 weeks today!! can you believ it!! My hair is still hanging on, less shedding:-) Cant wait to finsh Rads so i can go for a proper cut and maybe color:-) 

poohnutw3

Hey all, thanks Dexxy and Mostly Sew. I will look into the calendula cream. I went yesterday to my sim. Everything went good as far as I know, but it was so weird to me, everyone was nice enough but it just felt so robotic almost. I know they do this every day all day long but it was all new to me. There really was no direction for me I was wandering around trying to figure out where I was supposed to be and there was not another person anywhere. Then when I was done they were like ok you are done and that was all see you tomorrow which I already had explained many times my start date is Mon. I just felt so overwhelmed when I left. Thank goodness I have a wonderful husband who was waiting for me in the waiting room. And now they are saying I will go for 32 it seems like they just keep on adding days and I haven't even started yet. I can't wait for this to be over.

Sorry this is so long. I do have a question though. I do have larger breasts 38DD and I was wondering what do people do at night. Does anyone still wear a bra, a sport bra, soft shirt, nothing, not sure what to do, of course like everything in this adventure.

Have a great day. Stay positive 

dexxy

poohnut3- I'm a 36 E,  so right now I'm wearing soft tshirts to bed.  During the day I'm wearing Bralettes.  something soft and comfortable is the key.  did you do chemo? just curious

so far so good.  Met with the RO this week and he said by next week should start to feel the burn.  Just what i wanted.  I'm right there with all of you as well with the social worker.  She tracked me down as well, very nice but hey.  I'm through the worse, DS, Surgery and chemo.  Now you want to talk???? i don't think so, done fine without her help.

sorry some of you are having insurance problems.  We did as well in the beginning, but I think they gave up once chemo started.  Scary thing to me is I did chemo at a different hospital then I'm doing rads.  and talk about difference in cost.  The hospital I did chemo is about 2/3's less.  Then we wonder why our health care system is broken.  I think there should be one cost for each treatment, especially in metropolitan areas.

llm005

#17/23 done.  Big bonus was learning I only have 23 in total, not 25!  Of course, even 25 is nothing compared with the 30 or more that some of you are doing.

Mostly Sew -- glad you like the calendula cream and I'm glad it is doing the trick for you. 

5kidsmom -- whine away, I completely understand your crankiness -- I don't know how you can manage with kids -- I can barely keep it together with just a DH.  Hang in there.

Joan 811 -- I use the Boiron brand of calendula gel -- I found it in the homeopathy section of a drugstore, not the skin cream section.  It was the brand recommended by my RO.  The nurse said that some of the forumulations don't actually have much calendula in them so that might be something to consider when looking. The Boiron website says it is 7% calendula (it doesn't indicate a concentration on the tube itself).  Hope this helps.

Marthah -- I felt twinges once in awhile for the first week, so it's not all in your mind -- or if it is, it was all in my mind too! 

marthah

Wow...wth is the deal with the social workers and ACS volunteers? These patient advocate folks really need to get their acts together!

Same with the billing departments and insurance companies.

I'm fortunate in that I haven't had probablems from either direction. 

Keep on keepin' on, all you wonderful, marvelously STRONG women! :::hugs!:::

cupcakies

Hi - quick question for you ladies going through radiation (i won't be starting for another few months)... do you have to pay co-pay at each visit?  Thanks! 

Robyn6463

Cupcakies - The insurance cos are all different about co-pays for radiation. I WON'T have to pay them, and I think most of them are that way, but you might want to call your company and find out. That could be a big hit to anybody's budget!

5kidsMom

Since I whined/vented yesterday, and want to whine again, I thought I'd contribute something positive first   Maybe some have done this already, but I wanted to recommend the "look good feel better" class from the ACS.  No idea if a volunteer will hound you after it, they didn't with me   Went to this the week before I lost my hair, while on chemo and it was lovely!  Got a big bag full of makeup, and a volunteer showed us how to do our makeup with special info for hair loss (eyebrow loss!) and for sensitive skin from chemo or rads.  They ONLY allow women with cancer at the meeting, so you can share and relax.  After the class I got a free hat, another cloth headcover and a wig.  It was really nice.

So now my venting. . . . . got a card from my mother in law today--God bless her I know she means well.  In the card she mentioned how glad I must be that things are "getting back to normal".  Everyone around me feels that way--that things are getting back to normal for me.  Makes me want to scream.  I feel like things will NEVER be the way they were--yes, I'm getting out more, don't need meals brought in, people to drive my kids everywhere etc etc, but my whole life has been changed!  Ugh.  I do try to stay positive, but I feel like the "oh everything is back to normal" is completely unrealistic.  I'm trying to make things normal for my kids, I'm trying to fit back into life, but really, I'm far from normal at this point! 

Thanks for the vent--much cheaper than going to a psych

rn4babies

Hello everyone! I had my mapping done today. They put me in what looked like a CT scanner. Is this normal? I wasn't aware they were going to do this and I know I have to have preauthorization for a CT scan. I hope I don't get a big bill. They did tell me treatments would be paid at 100%. cupcakies......I had a copay for the first visit because the RO saw me. They told me I'd have no more copays because they are included in the charge of the treatments and aren't billed separately. They will call me with my appointment to start my treatments. Finally! I will have 30 treatments all together. 25 with 5 boosts. I'm so glad I have you ladies to go through this with. It seems like no one else understands. (((HUGS)))

MostlySew

Yes, I'm using the Boiron Calendual Cream also. I actually got it from Amazon if you have problems finding it in your local store (must be one with homeopathic stuff, not a regular drug store, at least out here).



Another thing out here is we don't have the social workers. I think all of you have made excellent points about them and those feelings should be relayed to these workers. They want to know how you're feeling and how they can help, well tell them. In no uncertain terms! It will feel good at least.



I'm so sorry some of you are dealing with insurance issues on top of everything else. I fortunately don't have that problem either. I did get a call from an insurance company case worker the other day saying I'd been referred to them and how was I? I mentioned about the breast cancer and, of all things, this worker didn't know I had it! What? Apparently I must have hit some sort of magic price limit and that's why they were calling! So, I ran a whole slew of technical terms at the poor nurse case worker and she agreed I was doing just fine! Took care of that call, I did! I hope.......



Man, I wish I was getting 23 instead of 33, I'd be just about done......21 completed today.....

dawmson

I was on the Sept 2011 board and the moderators posted a link to a study testing the use of melatonin emulsion during radiation. Have any of you heard of that? I hadn't heard of it but the study results sure looked promising!

http://www.breastcancer.org/treatment/radiation/new_research/20101004.jsp

tvacrat

Isn't IORT radiation? Why do you need to do more?

Dahlia1966

Hi ladies, had my 22nd treatment today and I started having pain in my back near my ribs and shoulder blades. (same side where I am getting treatment). Just wondering if anyone experienced this kind of pain. The dr said if the pain doesn't go away, he will send me for an xray. I'm kind of scared.

Kay_G

#7 is done!

No copays for me for rads either.  I think it is the policy of the hospital I am going to.  No one pays anything when they come in.  I remember a coworker had to pay them at a different hospital although that was several years ago so maybe things have changed.  It would definitely add up very quickly.  She also had to pay for parking in addition at that hospital.  They validate parking at the hospital I am going to.  Otherwise parking is about $3 per hour.  When I first started chemo, you had to pay for parking for chemo.  Very recently they changed the policy and now chemo validates parking too, but not if you're just there for a test or office visit.

Ceeztheday

#30 today. Five boosts to go. Pretty tough going, but at least I'm seeing the light at the end of the tunnel.

Dahlia - I did not experience exactly what you are describing, but I am having a variety of weird muscular pains. I figured out that it was from trying to sleep in such weird positions. My raw armpit is making it difficult to sleep on my left side, impossible to sleep on my right side, and I have never been able to sleep on my back or stomach. Anyway, I am in rather odd positions to get semi-comfortable, so some muscles are getting sore. I hope that your pains are equally harmless. You were right to tell the dr about the pain. They can get you more info. Best of luck and please keep us posted.

5kidsMom

Question about all of you talking about "boosts".  EVERY treatment, I get a sheet of this gel/rubber like stuff over my skin for some of the fields.  The tech calls it a boost.  When I asked about it, he said it acts like my own body tissue?  Weird.  I'm always full of questions for them but haven't asked about the boosts yet.  I'm scheduled for 38 rads, but not sure on the boosts.  #7 today, and skin is already pink in a square area where that gel stuff rests during treatment.

Ceeztheday: sounds painful with the raw armpit!!  Mine feels swollen and sore already   do you have a recliner?  I knwo that was always more comfy for me after my MX.  Maybe I'll end up back there again!

MostlySew

Ceeztheday

Alright! You're almost done! The home stretch for sure! Hope the boosts are easier for you.



Calendula is still doing a good job for pain for me. Used just Aquaphor at bedtime last night and had to get up at 2 am to put on the Calendula cream for the pain. Fatigue comes and goes. Very strange. 21 of 33 complete! 12 more sounds so simple but it still takes weeks to complete. Now my hip has gone out due to all my inactivity. Boy, if it isn't one thing it's another!



Hang in there everyone, this too shall soon be over (my new mantra).

Joan811

Social workers -- I had a timely call right after my first consult with BS at a women's center.  She was so polite and made herself available.  I am wondering if I will be approached, as I changed medical centers.  It sounds like the social workers are 'practicing' with those approaches.  Maybe they should have a BC volunteer who has been through it.  (but oh no, better to have the degree and credentials?)
Creams - thanks for the brand name for the calendula.  I order everything on line, so will look for it.
5kidsmom - You have a right to vent!   I called my older brother for his birthday last night and he said "well, I outlived Dad"; to which I replied, "well I got cancer younger than Dad (liver - 64) or Mom (chronic leukemia - 67)"....Then my brother "reassured" me that well, they found my cancer early and it's treatable.  UGH I had no words.....not to mention that he had not called me since August when I told him.  Yup, he should know, I'm fine -- I'm back to normal.
I got my rads appointment today - November 3rd.  Thanks to you ladies, I knew what to ask!
I am keeping my 2nd opinion oncologist appt. Nov. 1st.  I think it will help me to be sure of my path.
Before I go to bed, I will swallow my first Arimidex - with a prayer that I will tolerate it well and that it will help my body to not allow ca cells to grow.
Hugs for all.

Kay_G

Joan811 good to have your appointment made.  Good luck on the Arimidex.  I think it is a great idea to say a prayer with it.  Once I start Tamoxifin I will do the same.

5kidsmom I could be wrong, but it sounds like you're getting a bollus not a boost.  I get bollus treatments every other treatment. They put that thing over me and tape it down.  I do not remember the RO saying anything about it, but I asked the techs and they said it brings more of the radiation to your skin to make sure that gets treated.  Not sure why you would be doing it every time and me every other time.  But then you say you only have it on for part of your treatment, and when I do it I have it on for the whole treatment.  This is some crazy stuff.  Wish I understood more of it, but am putting my trust in the professionals for the things I don't understand.  Have a great day everyone.

marthah

So, I just freaked out a little bit.

Many of you have been talking about the use of Miaderm. I read some material on it (as well as the melatonin cream study, which is too small and warrants further study, I think) as a way to prevent radiation dermatitis. Soooooo...I just went and ordered 2 tubes. I looked around for the cheapest price, and if you buy it directly from the company, and buy 2 tubes or more, you can get free priority shipping. You can also pay for it through your Pay Pal account, if you have one (I have one because I'm an ebay-er.) It's pretty pricey, $28 for a 4 oz. tube, so I thought the free shipping was worth it. 

I'm a little worried because my RO didn't tell me to do anything preventative, so I'm taking matters into my own hands. The company reports that Miaderm was developed by RO's and is FDA approved for this use. That tells me it's undergone pretty rigorous testing. 

Have a lovely Friday, ladies!

Treatment #4 today...now a weekend break. Yay!

5kidsMom

Kay you are so right. . . . my mind is just so mixed up!  I'm getting a bolus, not a boost   so glad I asked, cause now I remember more of what they said.  Yes, it "slows" the beams down so they treat the skin.  Duh.

Maybe that's why my skin is looking sunburned in the same shape as that thing

Natters

Marthah, I ordered 2 bottles of miaderm myself, and I plan to start using it as soon as I start rads. My RO or his nurse didn't recommend it but I saw on here that lots of women like it, and it contains both calendula and aloe vera. They didn't tell me to start moisturizing yet, but I am not in the habit at all, so I have started moisturizing that breast with Lubriderm in advance. I figure if the skin is in fairly decent condition before rads, it may respond better? I dunno, just guessing and hoping here.

The only recommendations I got from my BC has been to switch to a natural deoderant (I chose Tom's) and use something gentle like Dove soap, and to quit shaving that armpit. I have one more race this season, so I haven't stopped shaving yet, because I like to paddle in sleeveless tops. I know I'm being a baby but it's not just vanity - the extra hair is going to make me sweat more, and I'm already really sweaty when I work out. I just want to be comfortable for my last race on the 23rd, and then I will stop shaving.

My first appointment is scheduled for the 24th and I have no idea if they plan to give me more now that I waited, or stick to the 30 the RO originally mentioned last month. I think he said 25 zaps and 5 boosts, but who knows. After reading comments on here, I plan to keep very careful track of my appointments, especially since I will have to miss a couple Fridays due to travel. I originally thought my real tx would start a week after the planning but now I'm not sure, after reading that some of you ladies got started the very next day or a couple days later. My tumor was at 2 o'clock on the left side so it might make it trickier to avoid my heart. 

marthah

FYI, just received a confirmation email from Pay Pal that my order for Miaderm has shipped already!

And that's free shipping, too! I should have it by Monday, or Tuesday at the latest. Pretty good service, so far.

marthah

RE: Soap and deodorant recommendations

This has come up several times in this thread, and thought I would repeat my experiences:

1) Soap -- my RO RN recommended Dove Unscented/Dye-free. She said it seems to have the least amount of acidic ingredients. I've only found it in bar form, but I like it so far. As I get older, I seem to be more sensitive to "scents".

2) Deodorant -- My RO RN also recommended Tom's of Maine. When I made my purchase, I selected the roll-on. The key thing to stay away from are metals (e.g. aluminum chloride). When I got the Tom's roll-on home, I read the list of ingredients, it listed some form of zinc, which I think is also a metal. I mentioned to my RO techs, and they weren't sure, so they gave me samples of  Naturally Fresh Deodorant Crystal Spray Mist. I cannot say enough about this product. I'm usually skeptical of "natural" products, but this one really works!

Robyn6463

MarthaH-Thanks for the deodorant suggestion. My RO recomended Tom's, but I'm not all that happy with it. I've used secret solids for years, and it's just not the same. I'll try the mist you recommend. I've found the smell of my sweat stronger and more offensive during chemo. I don't want to smell as bad as I look! We've always used unscented Dove, I've got kids that have allergic reactions to lots of soaps.

My daughter's MIL is the receptionist at the radiation center, so when I had my LAST CHEMO TODAY, she took me into the rooms and showed me all the equipment, told me what they were going to do, and said that most people find it's less stressful than they think. Then she told me to go ahead and take my anti-anxiety meds when I got there. She'll make sure I can get a ride home if I need one. I'm still a little freaked, but not nearly as badly. I'll have 28 treatments, not so bad. She's been so awesome, I've never got to know her well before, but she's come and spent her lunch break with me during each chemo. I feel very lucky to have friends there. So, SIM and CT next Thursday...and I think I start treatments 11/7. 

Ceeztheday

I love all the suggestions for products like creams and deodorants on this discussion group. I'll bet that amazon.com loves it too because they sure are getting lots of money off me as I try all the new ideas. Lol.